As I fed Dulcie yoghurt halfheartedly at an unearthly hour this morning, keeping one eye on proceedings through the crack of light my partially unopened eyelids would allow, I came across this post. Dulcie is now crawling about with a yoghurt coating as I completely lost my attention and spent a good while laughing at this instead. Better keep her away from the nearest Holland and Barratt in her condition or she’ll end up on the snack counter.
But it got me thinking, you see there’s no dream of special needs parenting. Pampers don’t have a picture of a teenager gazing adoringly at you whilst possibly waiting for a nappy change. There’s no advert for follow on milk to put down a gastrostomy. So I thought I’d compare what I think I should be doing every day for my two children, and the reality of what we actually achieve.
The Dream shall be represented by italics, they look all floaty like.
The Reality shall be bold, as brass you might say.
7am: A reasonable hour to start proceedings. Calm, unfettered. I am woken gently by my alarm, manage 3 snoozes, then get up and creep into Dulcie’s room where she beams up at me and we retire back to bed for a little cuddly breast feed. Rufus is still asleep, night feed having finished. He’s resting well before the day ahead. Then Dulcie and I head to the kitchen, she sits calmly and patiently in her high chair whilst I prepare a nutritionally complete and texture exploratory breakfast. Whilst also preparing a pump feed, and taking the pre prepared syringes of medicine out of the fridge ready for Rufus. She eats it all, maybe a cute smudge of something on her nose which she happily allows me to wipe away. Rufus stirs upstairs, letting us know by quietly chatting to himself or playing with his toys.
8am: All is prepared for Rufus’s first feed of the day, which I bring him down to his chair to enjoy CBeebies (err, to learn things right), administer his medicines and flushes and attach his pump feed. Dulcie has been patiently waiting in her high chair, laughing at the leaves outside the window and absorbing the headlines on radio 4. When I bring her through, she sits and watches CBeebies too, both entranced whilst I enjoy a hot cup of coffee and toast. I will emphasise that this should be calm. Still waters calm.
7am: We’ve been up for an hour and a half. Rufus’s pump has alarmed 15 times for no obvious bloody reason and I’m ready to take to it with some kind of kitchen implement. He’s been having a good cough and retch on his overnight feed so we’ve vented his tube and sang many renditions of “twinkle, twinkle”, whilst giving deep compression cuddles so that his ear piercing screaming doesn’t wake Dulcie/the neighbours/the dead. Fail. Dulcie is awake so I take her into our bed for an ‘if in doubt, stick a boob in’ feed. She has little to no interest, so takes about hitting me in the face with a nipple pad until I give in at 6.30am and take her for her breakfast.
I fight her spaghetti legs into the highchair, squint into the fridge and decide that today will be philadelphia on toast, whatever bit of fruit that is on it’s way to overripened and a yoghurt kind of breakfast. I decide on this combination every morning, and yet my ingenuity is always a pleasant surprise at this hour. She happy screams, flings all food around, licks the tray, poos, and covers herself in more food than I think I’ve given her. I ignore her and look at facebook. She screams as if I am trying to remove her fingernails when I attempt to wipe her up. I decide to let her ‘crawl it off’ on the carpet.
8am: Not sure if Rufus has been back to sleep, the power of walls means that if he’s not upset, I can’t hear him and therefore he is OK. Wolf has been down and made up his feed, and thankfully drawn up his medicines the night before. He is brought down to CBeebies which he enjoys whilst coughing and retching through his first feed. Dulcie’s shouts from the high chair are escalating, the leaves outside the window are annoying her, so I bring her through. I attempt to vent him whilst Dulcie applies her sticky starfish hands to my face, his face, the tube. I move her to the other side of the room. She starts grazing her way through the newpaper rack. Note to self to move that. It is utter chaos. I eventually drink lukewarm coffee when I’ve taken Dulcie upstairs for a change and nap.
9am: All of us showered and dressed, Dulcie having a nap, we are ready to receive one of Rufus’s team of visitors. I have my shit together. Let’s imagine the dream day is we are planning to go to a playgroup. Whilst Dulcie sleeps and Rufus is ensconced in his corner seat with some sensory or educational activity I enjoy my second hot beverage of the day, possibly make a phonecall or two from the to do list I have been carefully compiling throughout the week. Washing in the machine, I prepare the nappy bag and assorted ‘meltdown’ preventing implements. Put everything in the car ready to go. Last minute check in the mirror, good to go at 9.45am.
9am: I am not showered. Crap. I’ve thrown some clothes down the stairs at Wolf as he’s ready to leave the house with a “would you mind just getting him dressed in these”. I pretend I hadn’t noticed he’d filled his nappy during The Tweenies. I have managed to get Dulcie dressed, but seriously contemplating a lie down in the aftermath. An oiled squid would be easier to get into tights. Rufus is in his corner seat with whatever I could find on the floor of the backroom. I shower and dress whilst simultaneously staring blankly trying to remember where I’d put that list of people to call. Suddenly it’s 9.45am. So I flap about, grab whatever I can, narrowly avoid forgetting a child when getting stuff in the car and avoid looking in the mirror.
10am: At the playgroup we arrive, breeze through the doors with Rufus and his kit in a pushchair and Dulcie placidly waiting in the sling. I put her down where she obediently waits whilst I bring in Rufus’s seat, and then him. Rufus is interested and happy. There are only giggles and playfulness. Dulcie stays by us, happily joining in with the activities. They are overjoyed by this opportunity to further their collective development.
10am: I try to open the door with my bum and elbow, before giving in and using the pushchair as a battering ram. I have a faint sweat on my top lip already from having to park the car, ignore the looks as we are entitled to the disabled bay, and then remember how to put up the pushchair, put in Rufus’s equipment (something to sit in, lots of things to distract him, perhaps his feeding pump). Oh, and not forget Dulcie. Dulcie attempts feats only seen previously by Houdini to get out of the sling. I put her down, she heads straight for the bin. And then starts crying when she pulls it over. Rufus then starts crying as I bring him through. I then spend the next hour trying to get Dulcie to come back to us, to ensure Rufus is interested in happy, whilst also dancing both of them round the room. They are underwhelmed by my efforts. Dulcie still wants to play with the bin, and Rufus does a Jekyll and Hyde act of equal parts screaming and laughing.
12pm: Lunchtime. A chance to improve Rufus’s oral aversion whilst simultaneously introducing Dulcie to new flavours and interesting foods. Those in the know will refer to this as ‘messy play’. I will have a salad knocked up from all the fresh vegetables I am offering my children.
12pm: Rufus has fallen asleep on the floor in the back room, so I attach his pump feed and allow him a power nap. Dulcie has been shouting about lunchtime from 11.30am, so she has been appeased by breadsticks. Decide that she can have a variation on my genius breakfast menu, but with the addition of a vegetable. I know, I know. Annabel Karmel is shaking in her boots. Again, an emphasis on the mess. I don’t like this game. I eat some of her scraps off the floor plus some of her well devised menu whilst stood up at the kitchen counter still trying to remember what I had to do today.
2pm: After Dulcie’s lunchtime nap, I set about concocting some mutually enjoyable therapy activities. Some floor physio, perhaps some work on fine motor skills, some memory games. I have set out the back room accordingly, I know the location of all Rufus’s extras- shoes, glasses, gaiters- so that we can seamlessly begin play.
2pm: Feeling guilty that Rufus has slept on the floor, I decide to make up for it with some other therapeutic activities. I spend 20 minutes locating shoes, glasses and gaiters only to find at least two of those items weirdly in the kitchen. I set everything up whilst ignoring Dulcie’s pleas that naptime is over. Bring her down, she makes a beeline for Rufus and starts pulling herself up on him. He decides he will not tolerate this and lashes out which surprises all of us. There is a knock at the door. So that’s what I’d forgotten- Rufus’s physio/play therapist/Speech and Language therapist/feed delivery yada yada yada. Well, at least it looks like I’m always ready for therapy.
5pm: Dinner and bathtime. We will have spent the last few hours switching between various activities, whilst also allowing some free play. I will have had a bit of afternoon tea. They will have interacted nicely with each other, whilst also absorbing all the activities on offer. Dulcie’s dinner again will prove another opportunity for working on feeding therapy. I will have prepared something from the Baby Led Weaning Cookbook earlier. Bath time will be full of splashing giggling children, after which they will be wrapped up in their pyjamas just in time for In the Night Garden. Rufus will have his feeds and medicines ready. Tired, at 7pm, they will both drowsily go into their cots and straight to sleep. Rufus will then have his overnight feed started whilst lying in the right position for his reflux.
5pm: I’ve spent the last few hours counting down the seconds. I will have spent the afternoon trying to entertain both of them and then decided to drop a ‘therapy bomb’ on Rufus when I realise we have done very little. This bomb will try and combine everything at once. 9 times out of 10 he will protest. I will have not remembered how many biscuits I’ve eaten. Dulcie’s dinner will be scrambled egg served directly to her tray with whatever snack- sweet or savoury- we happen to have in. I will attempt to tidy up by throwing things in drawers and bags. Bath time is separate to stop Dulcie pulling out Rufus’s tube. I spend her bathtime trying to get her to sit down, and Rufus’s bathtime trying to get him to sit up. Wolf is home and sorting out Rufus’s feeds and medicines whilst I decide to tell him about our day by shouting from the bathroom as he is in the kitchen. Rufus poos in the bath. After In the Night Garden, Dulcie either goes down after her feed or is ignored until she tires out. After pouring a glass of wine, I check on Rufus every 15 minutes until he has stopped turning himself round the wrong way over and over again and wrapping himself in the tube.
8pm: Wolf and I will have our dinner together and discuss our days. Together we will write down the various things that need chasing up. We’ll then sit down to enjoy some television we both enjoy, before retiring to bed at a decent time. The children will still be asleep. I’ll have had time for a little bit of housework and to tidy up from the day.
8pm: We’ll have our dinner on our knees, where after arguing over something to watch, we’ll agree to something that will cover the length of time it takes to eat and then go into separate rooms. I will fart about until bedtime, watching bad television, gossiping online, internet shopping. Just before 10pm I’ll attempt to hide some of the debris of the day. Wolf and I will go to bed where I’ll suddenly remember all the things I was supposed to chase up today and decide to tell him instead. I ask him to remind me tomorrow.
Check us out… We look like we were living The Dream here on the brilliant Mother’s Project. But if you take a proper look you’ll see signs of The Reality everywhere.